Autism Spectrum Conditions… a culture or a disorder?
|I had a letter from a fellow Autie Spectrum person writing to the United Nations in the pursuit of having those with Autism Spectrum Conditions recognised as a social minority whose rights need to be protected. I describe these people as ‘culturalists’ meaning they tend to see Autism Spectrum Conditions as a shared culture, the largest disability of which is the inability of non-autistic culture to accomodate their differences in respectful, empowering and constructive ways. The ‘culturalists’ havee widely attacked pressure groups which seek to ‘cure’ or ‘eradicate’ Autism Spectrum conditions, particularly through genetic screening and engineering which they see as a form of Eugenics (an immoral social quest for ‘purity’). The ‘culturalists’ rightly argue that many people on the Autism Spectrum have one or more parents with features of an Autism Spectrum Condition and that often the condition is at least partially genetic but that this does not necessarily make it an illness.
On the other side, those who seek a ‘cure’ or eradication of Autism from the planet are often traumatised by feeling deeply for the frustration and distress of some of the most severely affected individuals diagnosed with Autism, some of whom actually suffer from (sometimes treatable) severe medical conditions including gut and immune disorders, and/or mood, anxiety and compulsive disorders to such severe degrees these severely limit the expression, comfort and capacity of those individuals. I have been close to people in both groups and know that not all of the distresses, frustrations or anguish of those diagnosed with Autism comes down to society not understanding or accomodating them and that many of those most severely affected by Autism are understood and respected but suffer, nevertheless, from (often untreated) co-morbid medical conditions which can severely exaccerbate the extremity of their Autism. By contrast, I have met many people for whom an Autism Spectrum Condition has no associated health issues not directly attributable to the stress of being incompatible with non-autistic multi-track and social systems.
This fellow Autie Spectrum person asked for my feedback in her submission to the United Nations…. I wrote the following clarifications (below) then thought this was perhaps interesting or useful to others in summing up some of the differences between Autie-Spectrum and Non-Autie populations and demonstrating that there IS a middle ground between the ‘culturalists’ and the ‘cure-seekers’ in which both perspectives are recognised and respected.
Personally, I do struggle with being mono-tracked in a multi-track world and having a Solitary, Idiosyncratic and Artistic personality in a world where this combination of traits predispose me to fixation on my own space, my own world and my own creativity in a world that is usually more externally oriented toward socialising and inter-verbal blah, and whilst working on my weaknesses and improving my processing as best I can through nutritional tracks, tinted lenses, gestural signing, the use of objects as communication tools and insistence on a more indirectly confrontational style of interaction and communication has helped me enormously, I’d not be able to cope or relax into my ‘cultural differences’ had I not also sought and maintained treatment for gut/immune, mood, anxiety and compulsive disorders which have at times been so severe and distressing as to pose very real threats to my health and life. So, for me, treatment, has some very real validity, as much as empowerment, respect and accomodating diversity does. I’d not be who I am without all that I am and have been. But sometimes we have things in such abundance and degree that it is more than our body, mind or emotions can stand and I support anyone in this situation who chooses treatment over giving up and giving in and those who support them in that choice, either before or after they have an ability to concieve, express or act on those choices themselves.
… Donna Williams *)
here’s what I replied…….
I totally agree with the need for those with an Autism Spectrum Condition (ASC not ASD) to be recognised as a minority whose rights and needs need to be acknowledged and respected by the majority..
But on the basis:
they have a shared information processing difference to the majority of the population
a) that we are usually receptively mono-tracked information processers in a world of majority multi-track processers who often fail to provide us with forms of education, communication, social activities/networks, occupational and employment most appropriate to their own form of information processing
and that those with ASCs also often share a collective of personality traits more common among their minority population than those of the majority of the population including
b) Solitary, Sensitive, Idiosyncratic, Artistic personality traits
c) the sexual orientation of those in this group is of a different ratio to the general population with a far higher proportion of bisexual, homosexual, transgender and asexual people than in the majority population
and that these things combine in most cases to produce a distinct set of ways of relating, communicating, thinking and behaving that are far more shared within this population than in the majority population and it is these shared ways of relating, communicating, thinking and behaving that are currently the basis of subtle and overt social discrimination on a wide variety of levels.
and that it is currently furthermore that a fair proportion of those with ASCs often have a higher level of, sometimes disabling, co-morbid treatable medical conditions such as gut and immune dysfunctions, mood, anxiety and compulsive disorders such as OCD and Tourette’s and that whilst these impact and increase the degree of one’s ‘Autism’, these deserve treatment as much as any medical condition when at a level that disables the individual and should not be confused with the ASC itself.
… Donna Williams *)